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I’m FREE!!! I finished my last final (and got a 100% on the math final! WOOT!) this morning and I’ve been soooo relieved. This has been the hardest semester for me yet, and at some points, honestly, I wondered if I’d make it through the whole semester and get everything turned in on time. So now, I have a whole month to take a break. I have some writing I need to do for a contest (and it’s also relating to food allergies), have some time with some of my best friends planned, and best of all, I have time to just unwind and sew and bake. And yes, also catch up on blogging here. I spent so much of this semester sick that blogging just didn’t happen anywhere near as much as I had hoped. Just keeping up with school, and also keeping enough “MC safe” food on hand was enough of a challenge.
Yet despite all the challenges, I was able to do some pretty exciting things over the last 4 1/2 months. In September I traveled to Europe to see friends and family… and my cousin’s wedding. 10 days in a foreign country, (ok, not quite so foreign to me, I’ve been there before and I thankfully speak the language) with celiac and food allergies was NOT easy, but with God’s help, I had a great time and didn’t get sick from food!
November I managed to help for 5-6 days with Operation Christmas Child at the local collection center where we packed shoeboxes (which people had filled with toys, school supplies, necessities, candy and other stuff) into cartons to have shipped to a processing center in NC before being distributed to kids in need around the world. I also got to see one of my best friends and bake her a gluten-free birthday cake (she called it, “death by chocolate”, you can find the recipe here).
I discovered a new flour that works amazingly well for everything I’ve tried it for so far (aside from bread). It’s really great and works well, especially for muffins. Oh, how I love to make muffins with it! I just LOVE muffins.
And, did I say, I managed to finish the whole semester? I also had a few challenges and well, things I discovered that I wish weren’t true. Both of them have to do with food.
At the end of November I ended up having anaphylaxis. Yes, again. Just 4 months after the last time. And this time, it was at home with food that had been safe the previous day. We still have no idea what went wrong, and so since, my mom has been having me give my silverware a quick wash before I use it, as everyone else grabs stuff from the silverware drawer even when they have food on their hands. Though they try to be careful, accidents do happen. This time, they nearly gave me another shot of epinephrine, and also ended up giving me a total of 3 nebs on top of IV steroids over the 4 hours I was there.
A week later, I discovered the not-so-wise-nor-fun way that I probably have actually been avoiding peanuts for the last 2 years for a good reason. I lay down on the couch right next to Shado, who was beyond excited to see me (though he had seen me only 30 minutes before), and he just could not contain his excitement that he jumped over and licked right next to my eye before I had time to cover my face with my hands. I’ve been licked by our dog mannnnny times before and never had a problem. So I knew it wasn’t him I was reacting to when within a minute my eye was itchy and starting to swell. I quickly remembered that he had been licking peanut butter 30 minutes earlier so I went up to my room to take benadryl (finally have some in liquid form!). When I came back down, my mom asked me if I took benadryl. “Um, yeah, why?” Apparently she could tell by just looking at me that my eye was swollen. The scary part wasn’t that my eye was swelling, but the time it took (less than a minute) for it to start swelling, and that within another 2-3 minutes I started feeling zoned out and dizzy and my throat started to swell. I was very very thankful when benadryl took care of it though, as I really did NOT want to need the EpiPen after anaphylaxis the week before.
So, now we have to figure out the safest way to test what I’m really allergic to as there are some foods I’ve been avoiding that I don’t think I need to avoid, but I have enough suspicion that something is up with them to not want to test it at home. We don’t want to end up with anaphylaxis unless there’s absolutely no other option, but because I have a strange history of having negative test results, but still reacting severely to certain foods, we (my doctors and I) haven’t decided on the best way to go about this yet. But I would like to know soon, so that 1, I can know really what I can and can’t eat (and hopefully nuts are one of the things I can add back in to my diet!) and 2, so that we can know what to have a dog trained for. Because of the past reactions I’ve had, and other factors, I’ve been increasingly limited in what I can do and places I can go, we’ve started seriously considering obtaining a food allergy alert dog for me. This would mean a bunch more freedom and the ability to go to some places that right now are off limits to me (like being an on-campus college student).
All in all though, I’ve learned a ton this semester, both from school and life in general. And over the next month I have for break, I’m hoping to share tips and lessons learned from my travels back in September and also other food-related stuff I’ve learned and baked over the whole semester (including tips for baking gluten free bread). For now, I’m just thrilled to be done with school and have time to breathe! One day at a time.
I’ve hesitated writing this post for the last 3 weeks. I’ve written several drafts, but I’ve just not wanted to post about it yet, as I’m still getting over what happened. 3 weeks ago yesterday, I had to use my EpiPen for the first time while I was at SIL-UND. Yes, I did eat a TON of safe food for me during the 2+ months I was there, but there were a few issues at times, but they weren’t all that bad… at least the way my mind rationalizes things like this, they weren’t that bad if you compare them to what happened 3 weeks ago. Still, in the end, UND’s cafeteria did a great job of feeding me and it’s not going to be something that makes me never want to go back. They did a good job overall, and I’m hoping to go back next summer or the summer after that.
The first one was the 2nd week, and it’s totally my fault. I wasn’t paying attention to what I was doing and grabbed a blue carton of what I thought to be coconut milk in the special diet fridge, poured it over my gluten-free cereal and a bit extra in a glass, grabbed some other food and went to eat. I lost my appetite after 1 spoon of cereal, but forced myself to eat the whole bowl as I needed the nutrition to make it through 4 hours of classes that morning. I took a sip of the milk in the glass and looked at the glass, saw nothing frothy around the edges and went, “OH NOOOOO!!!!!!!!” No wonder why I hadn’t wanted to eat my cereal! In the end, it was a very close call, but benadryl kicked in just a few minutes before the EpiPen almost got used, and I spent 3-4 hours in the student health center where they watched me to make sure the reaction didn’t come back.
Lesson(s) learned: ALWAYS pay attention (!!!) to what you’re serving yourself! In the “special diet needs” fridge there were 3 different kinds of milk: rice milk, lactaid milk, and coconut milk. All were in 1/2 gallon cartons and they were all blue! So, I ended up pouring the lactaid milk in my cereal instead of the coconut milk. After that, the kitchen staff decided to move ALL of the food that was for me and my best friend over to a different fridge to make sure that I wouldn’t accidentally pour the wrong milk again. And, I would read the ingredient label on the coconut milk nearly every time I pulled it out of the fridge and make sure that it said “coconut milk”.
The 7th week, something happened and we still have no idea what. I thought it was gluten, but then when my throat started to swell and so did my tongue, I realized it was milk. Benadryl kicked in, and I was thankful to have avoided the EpiPen… except that in retrospect I should probably have used it. But, as I’ve never used it before, I didn’t want to.
The incident that I referred to at the beginning of the post though happened in the 8th week, the 2nd to last week there. This was the scary one, the bad one… the one that required the EpiPen to save my life.
The UND campus has 3 dining halls. One of which I know is safe for me to eat in if everyone is careful with my food. Wilkerson is great. But they closed it down for 3 days to clean it before the fall semester starts… and sent everyone over to the small cafeteria (Terrace) for those 3 days. Everything was set in place for me to be able to eat there. Wilkerson staff who were used to taking care of my food would be there, and they were moving some of my food, not all but enough for 3 days, to the smaller cafeteria. However, did I say it was a much smaller cafeteria? The fridge where they put my stuff was also shared with other non-safe items for me, and the space in the back was much more limited. My goal was to eat the 9 meals there safely. I didn’t care as much about taste, as long as it was edible and safe. Lunch the 2nd day there though ended up not being safe.
I’ve learned to pay attention to signs of losing my appetite during a meal as it always spells t-r-o-u-b-l-e. But there are more signs to watch for than just that. It all started with a itchy mouth and throat while I was eating and not quite feeling right. I finished up my sammich (gluten free sandwich) and ate the melon, the feeling only increasing. So, I took benadryl, letting it sit on my tongue a few seconds before swallowing (I for some reason only have benadryl in tablet form). It helped with the itchiness and kept the throat swelling down some, but I was starting to get dizzy. I told my best friend, and she started to keep an eye on me. 2 other friends came over and joined us, one of whom was one of my TAs (not the same one as I mentioned earlier) who also used to be an EMT, and he also knew where I kept my EpiPens and what I was allergic to. I knew that he knew what to look for and what to do and that he would use my EpiPen if necessary, so I was able to relax some and not be as scared of what might happen. We all hoped that it was just some random thing that was not a reaction to food and that it would go away.
But it didn’t. I sat there spacing out and dizzy, and struggling to breathe. Seth and another friend Katie kept an eye on me, Seth’s biggest concern at the time was my color, which fortunately stayed “ok” (as in, I wasn’t turning blue), (though after using the EpiPen he commented that my color was a lot better). Finally, around 30-45 minutes (I lost track of time, only remember some timing of things because of what they told me afterwards) they decided it was time to get up. God’s providence was amazing that day… not only did God send Seth and Katie to sit by me after my best friend left to do homework, but Seth and I usually had class at 1pm (and it was 1pm right then), but because of the project that had been announced that morning, neither of us had class that afternoon! Katie was going to bring me back to the dorm to make sure I was around people as I still wasn’t feeling right. Except, that when I pushed my chair back, I was too dizzy to stand up. I was also getting short of breath… as in, I was only speaking when I really needed to, and even then, it was only a sentence at a time. Katie and another friend helped me to stand to see if I could walk with support, but I didn’t want to walk.
That’s when Seth started saying, “I think it’s time for Epi.”
“I don’t want Epi.” I kept replying.
The kitchen manager came over and asked if everything was alright, and Seth told her what was going on. She remained calm, and they started talking about where my EpiPen was, I pulled one out of my pocket, but Seth went and grabbed my backpack and found the extra one in there. The kitchen manager suggested that if they were going to use Epi, then maybe moving me to a quieter place than in the cafeteria would be a good idea. So, with 2 friends holding me up, another friend carrying my backpack, we started the slow 10-15 foot trek out the door into the hallway, where we stopped and I stared at a bench wondering why they wouldn’t let me sit there. I didn’t want to walk any further. Seth started insisting that it was time for Epi, but I kept telling him that I didn’t want Epi… except that by this time I had deteriorated further and Seth could tell by the fact that I was only answering in 1 or 2 words at a time, and even then, it was with several breaths between words.
Seth asked me if my breathing was worse and I told him I didn’t know. Katie said that it seemed better because just a few minutes ago she could feel my breathing when she had her arm across my back, and now she couldn’t, so it seemed better. But Seth knew differently. I was talking less, and was refusing to walk further, and was breathing shallower. Seth asked me if he was right, and I nodded my head in agreement that I was worse. They still insisted that they wanted me to make it to the lobby where there were more comfortable places to sit, and when I refused to walk further, 2 more friends helped (a total of 4) carry me to the lounge.
I still didn’t want Epi when we got there, and didn’t want to have to decide to stab myself with a needle. Seth kept telling me that from his medical training, I fit the bill for using Epi, and that as a friend, I really needed Epi. I finally told him that if he thought I needed Epi, he could use it. That’s all it took. He pulled the EpiPen he had been holding for probably the last 10 minutes out of it’s case, took the blue safety cap off, and that’s when I realized what he was about to do. I’ve pulled the EpiPen out of it’s case many times to show friends and teachers how it works, but I’ve never pulled off the safety cap off except for when the allergist’s nurse taught me how to use it. My EpiPen looked strangely bare.
Seth came behind me, put the EpiPen in my hand, put his hand over-top as he had been trained to do when “assisting” someone to use their EpiPen, swung, and jabbed my thigh. The room was silent, and the moment I heard the “click”, it was clear. Seth counted to 10 and pulled it out, and we all waited. Within 30 seconds, I could feel my lungs open up and relax and I could breathe so much better. I didn’t realize how tight my lungs had gotten. I asked Seth, “did it really go in?” He looked at my leg, “well, there’s blood, so yes it did.” I started talking more normally and looked a lot better, and everyone around me relaxed. I don’t think any of us expected it to work so well and so quickly! Even though I had taught many friends how to use it in case of emergency, I never really expected it to work that well or that quickly, but I’m sure glad it did!
While Seth saved my life with the EpiPen, the kitchen manager had gone off to where there was cell reception to call 911. Within a few minutes the paramedics had arrived. They were glad to see me doing better, but were concerned when they listened to my lungs… breath sounds on the right were rather distant. They wanted me to go to the hospital because it needed to be checked out and get a chest x-ray, but left me the option of if I was going to go by a friend’s car or if I was going to go by ambulance. That is they left me the choice till it was clear that I was starting to not think clearly again, and couldn’t decide or really think about it. I just sat there trying to focus (but failing) on the question and going, “uuhhh… what did you just say?” After a minute or two (I really don’t know how long) it became clear to them that they needed to take me by ambulance, in case this signaled the reaction coming back.
By the time we got to the ER and they had done their primary evaluation, the ER doc asked me if my throat was swollen. Um, I didn’t think it was but now that I realize it, yes, but I didn’t think it was because it has been worse before. They told me that my throat still looked narrow. After more benadryl and another antihistamine along with prednisone via IV (youch! That stuff hurts in the IV, especially benadryl!), which knocked me out for a good 45 minutes where I was coming in and out of sleep, I felt a lot better. Just before they finally got the meds in the IV, I had tried to read an article on sign language linguistics for class on my computer, but after a few minutes, it was obvious that I couldn’t focus and couldn’t even read 1 sentence and understand what it was saying. The friend with me chuckled when I insisted on trying to do homework… I was really a linguist if I was trying to do linguistic homework while still recovering from anaphylaxis and insisted that I needed to do homework.
4 hours later, they let me go back to campus with a Rx for 3 days of prednisone. Yet I have so much more to share about being thankful for God’s provision during and after the reaction. Katie came to the ER in the ambulance with me, while 2 other friends came each in their own car, 1 to pick Katie up, and the other to stay with me. The friend who stayed with me didn’t have a class she had to go to, it was optional that day, and that was a blessing. I did miss my Brazilian Sign Language lab, but they anyway had recorded video of some of the things they had covered, and my TA gave me her notes on the page in the Goldilocks story. I didn’t have to coordinate any part of anything! God took care of all of it!
And, after using the EpiPen, none of the cafeteria workers wanted me to come and eat in the small one again. It was just too dangerous. So, for the next day, I had oatmeal for breakfast and cooked up some quinoa and dried lentils I had gotten for free mailed to me while I was at SIL-UND and had that for lunch and dinner. (Thank you God for safe food!!!) I was thankful for having been put in a different dorm than all the other SIL people at the beginning of the summer because I had access to a dorm kitchenette. Boy was I glad when we got back to Wilkerson though! I hadn’t ever been comfortable eating in the tiny cafeteria, so I was glad I never had to eat there again! Back in Wilkerson there was an increase in caution when anyone handled my food, and I was even more cautious that I had been.
Side note: I mentioned above about when Seth and Katie had been disagreeing about whether my breathing was worse or better, and Katie had felt me wheezing (which I almost never wheeze), and then I had stopped wheezing, but not because I could breathe better… rather because I couldn’t move enough air to wheeze… and that’s not a good thing. My breathing was really shallow and I wasn’t able to think clearly or really talk, that I didn’t realize how bad it was till 2 weeks after it happened. I could have died. I came close to dying. They didn’t do a chest x-ray in the end because when I got to the ER, my right lung was starting to open up and got back to normal by the time I left (thank you God!).
Also, the ER doc criticized me for not using the EpiPen faster than I did. He said that next time (which hopefully won’t ever happen) I need to use it faster. I’m very thankful that Seth put Epi in my hand and had me a part of using it, even if it was only with my hand holding it and him doing the actual action. After having used it once, if it ever happens again, I think I’ll be a lot less hesitant to use the EpiPen and less scared to use it myself. When I got the refills for 2 more EpiPens (my other leftover one is about to expire anyway) it came with a trainer EpiPen, and I’ve taught my mom and sister how to use it (still need to teach my dad and brother though), and I’ve practiced with it too. Hopefully I’ll never need to use the real one again, but if so, I know that God is always with me even in the harder times, and that he’ll give me the wisdom and courage to use it if if I need it. I don’t like limping for 2 days after the EpiPen, but I’ll take that over dying!
In it all, I can’t thank God enough for protecting me and keeping everyone calm, and that even if I had died, he has paid the price for my sins and forgiven me, and I would have gone to heaven to see my saviour face-to-face for the rest of eternity! But since I’m still alive, I thank God every day for life and breath, and I know that he has things he still wants me to do.
I now wish I had a dog that could smell my food for me and tell me if my food was or wasn’t safe… We did figure out what had caused the anaphylaxis the week after it happened: the sliced turkey. I had had minor reactions of tingling in my mouth and/or minor swelling in my throat and/or other symptoms every time I had the sliced turkey, but thought it was strange yet dismissed it because it always went away with benadryl. Turns out, the reason was because the turkey was being sliced on the same machine as cheese, even though they said they cleaned the machine well between.
So, if you find yourself in doubt of whether or not you should be using your EpiPen, make sure and talk with your doctor before the situation arises and you have a clear plan set in writing (because I didn’t). AND, make sure to be extra careful with food so you have less chances of finding yourself in a position where you might need to use epinephrine. And lastly, know this: epinephrine really DOES help, and fast! Just please don’t wait till it’s too late to use it. Severe food allergies can kill.
I’m back home, and have 2 weeks to catch up on posts that I had meant to write while I was in North Dakota. Oh well. They’ll get written and posted over the next 2 weeks. Here’s the one on special meal requests that I had mentioned I was going to try waaaayyy back almost 2 months ago.
I mustered the courage to try out the online special gluten free meal request form for dinner one night, and then I just kept on using it. The cooks learned how to cook safely for me (there was certainly some fear and trembling at times as I am the first severely food allergic student they have ever fed), and it was realllllly nice to have a cooked meal that resembled a “normal” meal instead of random other things and sandwiches. So, here are a few pictures of my dinners over the first few weeks.
I did have some reaction to one meal, which we have no idea what it was, but other than that, everything went well. Though this worked well for me, depending on your sensitivity and specific allergens it may or may not work for you, so make sure to discuss it with your doctor(s) and consider all the options before deciding. However, my experience is that it IS possible to eat safely in a college cafeteria, IF they are aware of how to keep food allergic students safe and really do take extreme caution.
I have had bad experiences with eating out before, to the point where I dread eating out nearly anywhere, as it’s really hard to really know what’s going on in the kitchen or anywhere that “my food” would be. I’ve dealt with a university cafeteria before (2 years ago, before I was really sensitive to dairy, and before I found out I had celiac disease and other allergies and sensitivities), and they did not know how to really provide safe food. They had good intentions and wanted to try to make sure I had food to eat, but they knew nothing about and when I explained what cross-contamination (CC) is only a few of the workers really understood. Unfortunately, the cafeteria head manager did not understand what CC was, and even less what “dairy” was.
So, this summer, I was nervous about going back to be an on-campus student for the summer, even though it was at a different university. I was told by someone who has been here before that the cafeteria has dealt with gluten-free students before, and that helped some, though I was still nervous. At church on Wednesday night a few days before I left for ND, the last verses on the notes handout was from Matthew 6:25-27 (NIV)
“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?
Ok, God, I think I get it. So I relaxed some, had some backup food in my luggage for the first days and was ready to start trying to work with the cafeteria when I got here.
Well, I got here almost a week ago, and I didn’t eat the first 2 meals in the cafeteria because I hadn’t yet talked with the dietician, but every meal since (14 meals), I have eaten there, and I’m still alive and haven’t gotten sick, yet. Hopefully it will stay that way. EpiPen stays with me every time I’m in the cafeteria and with me around campus, and we’re all hoping that EpiPen stays in my pocket and/or backpack for the whole summer. The last week has been really busy, with classes and homework pretty much all day every day so far, yet I’ve had many conversations with kitchen staff, and we still are working on solutions to things as they come.
Monday afternoon the other food allergic student (whom I’ve become good friends with) and I met with the dietician…. for 1 1/2 hours discussing food, food, and more food. We talked about different concerns, especially CC. We also talked about different brands that we were used to and what we had found worked at home. He gave us a tour of the different areas of the cafeteria, especially the “special diet needs” fridge. He introduced us to some of the head cooks (and I’ve met more since).
When we started talking about brands and he knew what brands we were talking about, that was a good sign for me. He knew what gluten free meant, he knew the difference between “lactose-free” and “dairy-free” (they do NOT always mean the same thing) and he was very very familiar with food labeling terms. But the most surprising thing? He has spent time to develop a complete listing of all the foods and the ingredient labels and different foods! ALL ONLINE!!!! AND!!!! he also showed us the special online GF food request form(on the right)!! I haven’t yet used the special request form, but I intend to look at it more closely this weekend and start using it next week. I just haven’t had time yet. However, I’m looking forward to using it. I’ll let you know how that goes.
For this last week I’ve eaten plenty of veggies/salad and fruit.
I’ve also had sammiches (gluten free sandwiches) and they even got a new toaster so that the gluten free bread could be toasted(I totally wasn’t expecting that)!!
They have looked for foods we can eat, and I’ve also been introduced to French Meadow Bakery‘s GF breads and treats (their brownies are reallly good), and also So Delicious’s Coconut milk (it’s actually pretty good, though a bit different from what I was expecting), and more.
I communicate with at least 1 of the head chefs every day, several times a day, and I’ve gotten to know 2 of them, and they are awesome! I trust them with my food as they really understand what I can’t have and are careful with my food and do everything they can to avoid CC. A few things have come up that I’ve been uncomfortable about, so they’ve found a safe solution for me
Fruit: I love fruit. However, I’m allergic to strawberries… and I’ve come close to needing to use the EpiPen at home a week and half ago because of strawberries. So, needless to say, I’m really uncomfortable getting fruit when it’s next to strawberries… especially after I saw a strawberry in the melon. The solution? They cut up fruit that is not strawberries nor bananas and put it in the special diet needs fridge for me before meals.
Sliced meat: I’ve watched people serving themselves, and there’s rampant CC between bread/buns, cheese and deli meat. The solution? They slice up turkey for me and put it on a plate in the special diet needs fridge each day.
There are a few other things that we’re still working out and trying to come up with a safe way to do them, but that should come in the next week as I keep working with the cafeteria.
Though I’m getting more comfortable eating in the cafeteria with accommodations and adjustments and such, I must still remain vigilant, because I’ve learned that every time that I am not careful is when I get sick, and I can’t afford dealing with that here with my crazy packed schedule of classes and homework.
So, in the end, I really have to say that the UND cafeteria has been doing an AMAZING job of feeding me safely so far, and their goal is to do whatever they can to keep me well-fed and safely-fed. I wasn’t sure what to expect when I first got here, but they have gone way above what I had ever thought they might do. So, way to go UND!!! And a HUGE thanks for all you do. I can’t thank you guys enough for all you’ve done so far in the first week of the summer and all you guys are working with me to do and feed me safely!!!! There is more I could say about how good a job they’ve done already so far, but that would take too long and I have homework to do still.
Note: I was not paid to do this review of the University of North Dakota’s Cafeteria, and all opinions in this review are entirely mine. My goal is providing this review is to help others with food allergies/intolerance to find safe places they too can eat.